30 Oct 2007

The NAS is running a new campaign to highlight the need for support, understanding and accommodations to help autistic people and those caring for autistic people. It aims to raise awareness of the condition and help discard some of the myths and misunderstandings about autism. I'd recommend that everyone who can, has a look at the website, and tells their friends and family about it too. You don't have to be autistic, have an autistic relative or even know someone with autism to want to do a bit to help everyone get fairer treatment and to be enabled to do their best.

There's a quiz where you can test your knowledge of autism, and a campaign pack giving more information. Please take the time to have a look and to share the link.

We've been making decorations for Halloween. I'm not quite sure what they all want to happen tomorrow in honour of the day. We won't be doing trick or treat anyway. It's not done round here. We might go to the Folk museum for a while, and then get a scary video to watch at home with fizzy drinks and popcorn. I was thinking about, Monster House; does anyone have a better recommendation? Nothing too scary, the children would be OK, but I frighten easily and like all my siblings, don't do horror.

When I was wee (ie, a child) we'd have a bonfire on Halloween night in the field across the road from our house. A load of cousins would turn up, and we'd eat loads of nuts and fruit and wear scary plastic masks (no other dressing up) and wave sparklers. It was always good fun, even if you ended up with cow dung on your wellies since you couldn't see where you were walking in the dark field.

Thomas intends to dress up as the not very scary, Harry Potter. What a surprise! Duncan has been wearing his Captain Hook outfit every day for over a week. He's worn it to all the shops, his Grandma's house, the swimming pool, and very dashing he looks too. I think Lady will wear her witch dress. I'll just be my hideous, evil and horrifying self. Look on me, and turn to stone...

Right, well. I have to give a big congratulations to my big brother T. He ran his first ever marathon in Dublin on Monday, and got round in 3 hours 39 minutes. What a guy! So hooray for him!

27 Oct 2007

Duncan enjoys the PC game Dogz 4. He has adopted, named and changed the appearance of loads of virtual dogs. I have to 'cull' a few every week or so. Among the names he's chosen are, John (a dalmatian he's turned pink, and who wears a top hat and glasses) a pig called Michael (who wears what looks like pink pyjamas), a dachshund called Duplo Train (he's red, blue and yellow), another called Sky Rider (another mixture of primary colours) and a poodle called 'jymp pynis'. That last one recalls one of his current favourite words.

Yesterday he was playing on YouTube. I found him a lovely film of the story, 'Where the Wild Things Are' which he and Thomas watched many times. Then he found some videos of Dogz 4 pets, including one of puppies. He's decided he wants his dogs to make puppies, so we're trying to make the John and Jane dogs fall in love!

Google is his friend. He uses the toolbar, and types as few letters as possible, then scans the suggested search words, to find the one he wants. It's helping him learn to read and spell. Sometimes he doesn't spell things quite right, but it's always a very good effort, 'cheez and unyin crisps' isn't too far wrong!

He can now decode really well when we read together. And I find it interesting, that after he works out the words bit by bit, he re-reads the whole sentence so it is smooth and makes sense. It's also clear that reading is and will continue to help his spoken language. Often he works out a word and seems to realise for the first time, 'oh that's how it's said' when he can see all the letters that he just wasn't able to hear somehow.

Today I dropped Lady and Thomas off at their jujitsu class and took Duncan with me to an enormous hardware shop. I had to buy a mousetrap. (I'd been reading in bed the night before when a little mammal intruder scuttled out from under my wardrobe door, then in again. There wasn't much I could do at the time except block up gap to try to contain it.) I choose a live trap thing so if it works, we'll have to release it away from the house. Duncan was fine, and had fun with some singing and dancing Christmas stuff, and a Jack in the Box (well teddy in a box really) which made him shriek with delight. When I'd sorted the purchases, he insisted in leaving the shop the way we'd entered, even though there are separate entrance and exit doors. I realised that he always does this now. When we're in the supermarket, we have to push the trolley back through the shop, instead of along the back of the checkouts. It's a funny little thing to need to do. But it's easy enough to manage. I hope he won't feel the need to leave the way he came in if we ever visit the new Ikea when it opens!

23 Oct 2007

So from one Noble, who may have been underestimated due to her model looks, but who has displayed depth of character and intelligence and loving support of her child, I hear all about the Nobel winner, who reveals more of his racist character, his misunderstandings of the concept of intelligence, and who has spoken harshly of his child.

James Watson has fled back home after shooting his mouth off just a bit too much. He was hardly a paragon of decency before he made his frankly racist, sexist and disablist statements to the press last week. It's sort of surprising to realise how the Science Museum and other organisations decided not to give him a platform, as if they were unaware of his reputation for thoughtless and inflammatory views. I first read about his warped opinions on Michelle Dawson's QuickTopic list. Someone (Philip, I think) had reviewed a book in which Watson had said several unsavoury things.

He says that he is “inherently gloomy about the prospect of Africa” because “all our social policies are based on the fact that their intelligence is the same as ours – whereas all the testing says not really”, and I know that this “hot potato” is going to be difficult to address. His hope is that everyone is equal, but he counters that “people who have to deal with black employees find this not true”.

Watson also seems to hold autism up for particular opprobrium. In the Times article, he talks of the “horror and destruction” of life that can arise from having a severely autistic child, and hopes that by diagnosing autism early, “we might prevent some [autism-prone] families having subsequent children”.

So he thinks Thomas shouldn't have been born then? Obviously he thinks I should have been able to prevent Duncan's existence. What a foolish idea!

For instance, he believes abortions are acceptable where a foetus is found to be genetically inclined to homosexuality.
"If they want to, let them," he said. "My wife really wants a grandchild."

Someone should tell him about all the gay parents out there! Would he advise abortion on fetuses found to have a genetic inclination to have fertility problems, or to be heterosexual and child free by choice?
I don't understand this idea that parents should be able to decide what kind of child has the right to exist.

I was most surprised by the sheer number of people who came out in support of him. Most of these quoted his 'right to free speech' claiming that by denying him a platform, the Science Museum, and others, were trying to gag academic freedoms to ask difficult questions. That doesn't make sense. He's free to say what he wants, but that doesn't mean he gets to say it in any particular institution. I also think that the maxim, extraordinary claims require extraordinary evidence, must hold true here. In spite of oh so many commenters on various liberal-leaning sites, crawling out to harp on about IQ tests showing that Watson was right, others have pointed out the numerous flaws and biases in such tests.

There's a summary of the events in the Guardian here, which includes the reaction of Craig Venter;

As Craig Venter, who pioneered much of America's work in decoding the human genome, put it: 'There is no basis in scientific fact or in the human gene code for the notion that skin colour will be predictive of intelligence.'

There was actually a pleasant autism story in some of the newspapers yesterday. Emma Noble, talks in the Daily Mail, about her autistic 7 year old son Harry, with love and respect. (Harry is the grandson of former UK PM, John Major.)

Emma is a beautiful, blonde haired, former model. There end the comparisons to Jenny McCarthy, who has done the round of USA talk shows plugging her book about her 'recovered' autistic child.

McCarthy blames vaccines for her sons autism and uses her celebrity status to spread her misinformed inanities. Here are a few choice quotes from her interview with Larry King. When he asked for a definition of autism, she answered,

Wow! Well, it differs for a lot of people. But -- or opinions. But I believe that's -- it's an infection and/or toxins and/or funguses on top of vaccines that push children into this neurological downslide which we call autism.

She was asked if she'd have more children, and said,

I got my butt kicked. You know, it was really hard those years. Pulling Evan out of the window, I call it. I suffered a lot. I cried a lot. I'm just ready to move forward. I'm ready to help out. I'm ready to spread the word. I'm ready to make this world a safer, cleaner place.

You get the picture.

McCarthy is the new face of quackery pushing autism organisation, TACA. As an example of their ethos, here's their sample 'To-do check list' for parents of autistic children. Among the many non-evidence based services mentioned (for the 1st year), are secretin, glutathione and chelation.

Emma Noble has not taken this self-serving route, and just gave a really sweet interview. The fee for the interview was donated to the NAS, a decent autism support charity, and one I'm happy to be a member of. The NAS does a lot of work to improve the lives of autistic people, both children and adults, and parents or carers of autistic people. Here are some highlights from the Mail article;

"My life would be empty without my son and the experience we have been through together. His autism makes him who and what he is and I love him.

"He makes it easy for me to accept because he makes me proud every day, proud of his achievements and of how hard he tries.

"There is no part of me that mourns the mother I could have been to a son without his condition. I simply don't know that person."

...

Emma reveals: "Harry needs to know what is going to happen and in what precise order. There can be no surprises and definitely no dramas.

"For example, he needs me to tell him what is going to be inside a wrapped present before he opens it.

"He pictures it to be something that he wants and then, if it's not what he had in his mind, he can't understand what went wrong.

"When he goes to bed he might have to touch the curtain a specific number of times and then similarly flick the light switch, climb the stairs in a particular way, ask if the cats are in their room, check the hall light is on and that the door is open at precisely the angle he wants. And he might make these checks 20 times.

"If he's worried he's done them wrongly, he'll have to get up and start again. And he's very literal.

...

She refuses to ask "Why Harry?", saying: "I could tear my hair out every night wondering why. There is no autism in either family and Harry did not have the MMR jab because I knew there was controversy over potential links to autism, which is ironic, really, given that he has it anyway.

"What I do know is that the number of children with it are creeping up every year. Whether that's because the incidence is rising or because we have better diagnostic tools I don't know. But I do know we have to deal with it and I hope I am now sufficiently informed to help.

"I don't want to betray Harry but it's only a matter of time before someone asks about my connection to autism and I have to tell them I have been gifted an autistic son and that I feel blessed to be his mum."

...

"I want people to understand that autism doesn't mean a lesser life, just a different one.

"I want people to know just how wonderful these very special children are and how much joy and love they bring to the lives of those lucky enough to know them."

18 Oct 2007

We went with my brother and his girlfriend to a Thai restaurant on Friday night and had a lovely meal and loads of crack too. On Saturday, we all accompanied the boys to a once-a-month club for children with disabilities, run by the Barnardo's charity. While I was talking to the project leader and watching Duncan settle in, one of the staff came up and asked if we had been to Fanad in Donegal during August. We had, and I remembered meeting her on the beach as she'd been out with her mum walking their dog. (Duncan had spotted their dog, and I had hastily gone to intervene if necessary. Duncan had been alternately running up to the dog, then squealing and running away. The dog was a bit spooked, she was quite a nervous animal. I had helped Duncan to calmly stoke her before he went off. I explained about Duncan's autism and the woman had said she works with autistic children, and she'd guessed he was.)

It transpires that this same woman is an occupational therapist trainee, and works in this play club. She recognised Duncan as soon as we came in. It's quite a coincidence, Fanad isn't exactly a bustling metropolis!

After the boys had settled in (Thomas was staying to play too) Gordon, Lady and me had an hour to spend together. I can't remember the last time we did this. Frequently each of the children spends time with either Gordon or myself, but not with both of us. I was reminded of the few times my mum and dad took me out for a meal on my own, when I was 14 or so, and how special I felt to have them to myself!

The boys had fun and made cakes of chocolate, marshmallow, biscuits and golden syrup. Duncan, obviously, enjoyed this activity a lot!

We didn't want to go home straight away, since we were having such a nice day. So we picked up some chips for lunch, then decided to take the train into Belfast. We dootered round the shops for a while, bought a few more sweets (have to keep the sugar levels up) and went home. Gordon and I were amazed at how well Duncan did. He held our hand, and enjoyed the trip out.

On Tuesday I took the children swimming, and like last time, it was a great success. Lady can already swim quite well, though she's never had any lessons. I will take her alone a few times to help her improve her style. Thomas was like an eel; jumping in and diving under. He managed to propel himself forward by a few metres. He has taken some big steps out into the world lately. He's definitely not the baby of the house any more.

Yesterday Gordon took a day off work and I convinced him that a family day out to the aquarium would be nice. It was too. The drive down along Strangford Lough is just so beautiful, especially on a sunny autumn day like yesterday. As expected the aquarium was very quiet, and Gordon spend a happy few hours discussing genetic diversity with Lady and a (not too interested) Thomas, while I took care of Duncan. The last time Gordon went there, the place was packed as the school were out, and it was all a bit stressful.

These trips out together are very important. Duncan is slowly becoming calmer and more manageable. He still sees things he wants to have, but we can now negotiate better about what is and isn't acceptable. He's continuing to develop, and we can really foresee how he will continue to do so as he gets older, just like all children, though on his own trajectory. It's also important to have the public get more used to seeing a non-typical child out with his family and having a good time.

15 Oct 2007

Last year we heard about what had been done to a little girl in the US. She was known as Ashley X, and she had been subjected to numerous extreme surgical and medical procedures. Many of us wrote about our horror at what had happened.

Now I read about a 15 year old English girl with cerebral palsy, called Katie Thorpe. Her mother, Alison, wants her to have a hysterectomy and explains why in the Times;

“We already have to do everyday things for Katie that most people do for themselves,” said Thorpe. “Katie has an undignified enough life without the added indignity of menstruation. She will not understand what is happening to her body and it could be very frightening for her.

“Katie would be totally confused by menstruation. She could not manage it by herself.

She could not keep it discreet, she cannot be private. What we need to do for Katie already is undignified enough.”

I think this is important; the reasons stated here do not in any way, justify a major surgical procedure, with a long recovery time, and life long after effects. I really fail to see why menstruation is considered such an indignity. In practical terms, it would be a few mls of blood once a month or so, added to the pad Katie already must wear.

It's evident from the numerous newspaper and TV interviews given my Alison Thorpe, many of which show photographs of Katie, that Katie has not started her periods yet, and there is no mention of a medical problem that would call for hysterectomy as a treatment. There is no reason to suspect that she will have painful periods, or if she has, that painkillers would not help. There are also other, much less radical and invasive approaches available in the event that Katie does has extremely painful periods. I don't think that any doctor would be wiling to perform this procedure when it appears to be medically unnecessary. At least I hope not.

There have been several references in the media to Katie's 'mental age', stated as 18 months in some articles, 6 months in another and 3 months in another. The Mail journalist writes;

She has no need for a womb. People would be horrified at the thought of a baby menstruating, but that is what Katie is. All she will know is further discomfort and confusion.

Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.

From what I have read, most people giving their opinion, think that Katie's mother should have the right to decide. As a home-educator, I want minimal interference from the state in my duties to raise and educate my children, in accordance with the law and my personal philosophy. Parents have the right to make judgments for their children, and the state must presume that parents know best. It's an 'innocent until proven guilty' thing. However, when it is clear that a parent is not doing the right thing, like failing or neglecting their child, then the state has a duty to step in and make inquires and if warranted, take action. Likewise, if a parent decides that they want their child to have a totally unnecessary surgery, the state has a duty to that child, not to give the parent authority to allow it to happen. That the child is disabled should be irrelevant. Parents sometimes are wrong no matter how much they love their child.

Loving is writing about your child with joy, compassion and pride, delighting in her development and achievements. It is investigating the claims made about all sorts of causes of autism and supposed therapies then using reason and logic to sort out fact from fiction. It is loving to write about abuses and the murder of autistics and to counter the claims made by some that these crimes are understandable, or even excusable. You are motivated by love when you do so much to promote a better understanding of autism as a human variation to be accepted.

Hating is acting in a way you know will hurt a family via their seven year old autistic daughter.

Left Brain/Right Brain was probably the biggest (and in my opinion, the best) autism blog on the net and it's author, Kevin Leitch, has become a friend too. I've been reading his blog for years and it has helped me immeasurably. Kevin and his wife have had to make the difficult decision to close the blog because of their valid fears for their daughter, who has been used as a target of abuse and shocking written attack by a hating individual. I am very upset at what has happened. I support their decision and wish them and their beautiful children the very best.

The Autism Hub may have to take another form, but the blogging will continue. Many of us, especially the parents of autistic children who have started blogging, have been directly influenced and motivated to do this by Left Brain/Right Brain. So even if that blog has sadly ended, and how I will miss it, the writing will continue.

12 Oct 2007

Isn't it funny how you almost always hear, in any discussions from proponents of various therapies for which no evidence of effectiveness exists, that the 'allopathic' practitioners, or big-pharma or the establishment, are suppressing the truth, trying to gag them, deluding the people. Well, here's evidence of exactly this sort of thing, only it isn't big-pharma doing the suppression, it's the Society of Homeopaths. They have threatened the writer of the Quackometer blog, with legal action, if he didn't remove a post critical of them. Actually, they didn't even approach the writer, but complained to his ISP with lawyers letters, though it's not known what exactly they object to in the post.

This isn't what I write about, there are many great bloggers tackling bad science stories, but this is just disgusting, and like many others, who intend to high-light the heavy handed antics of the SoH, I wanted to link to the story, and copy the post here. It's currently available on Google cache. There's more about the whole incident on David Colquhoun's blog. (I managed to name check Gordon's favourite lecturer in a post!)

Here's the post from The Quackometer;---------------------------------------------------------------------------------------------------------------------------------------

The Society of Homeopaths (SoH) are a shambles and a bad joke. It is now over a year since Sense about Science, Simon Singh and the BBC Newsnight programme exposed how it is common practice for high street homeopaths to tell customers that their magic pills can prevent malaria. The Society of Homeopaths have done diddly-squat to stamp out this dangerous practice apart from issue a few ambiguously weasel-worded press statements.

The SoH has a code of practice, but my feeling is that this is just a smokescreen and is widely flouted and that the Society do not care about this. If this is true, then the code of practice is nothing more than a thin veneer used to give authority and credibility to its deluded members. It does nothing more than fool the public into thinking they are dealing with a regulated professional.

As a quick test, I picked a random homeopath with a web site from the SoH register to see if they flouted a couple of important rules:

48 • Advertising shall not contain claims of superiority.

• No advertising may be used which expressly or implicitly claims to cure named diseases.

72 To avoid making claims (whether explicit or implied; orally or in writing) implying cure of any named disease.

The homeopath I picked on is called Julia Wilson and runs a practice from the Leicestershire town of Market Harborough. What I found rather shocked and angered me.

Many illnesses and disease can be successfully treated using homeopathy, including arthritis, asthma, digestive disorders, emotional and behavioural difficulties, headaches, infertility, skin and sleep problems.

Well, there are a number of named diseases there to start off. She also gives a leaflet that advertises her asthma clinic. The advertising leaflet says,

Conventional medicine is at a loss when it comes to understanding the origin of allergies. … The best that medical research can do is try to keep the symptoms under control. Homeopathy is different, it seeks to address the triggers for asthma and eczema. It is a safe, drug free approach that helps alleviate the flaring of skin and tightening of lungs…

Now, despite the usual homeopathic contradiction of claiming to treat causes not symptoms and then in the next breath saying it can alleviate symptoms, the advert is clearly in breach of the above rule 47 on advertising as it implicitly claims superiority over real medicine and names a disease.

Asthma is estimated to be responsible for 1,500 deaths and 74,000 emergency hospital admissions in the UK each year. It is not a trivial illness that sugar pills ought to be anywhere near. The Cochrane Review says the following about the evidence for asthma and homeopathy,

The review of trials found that the type of homeopathy varied between the studies, that the study designs used in the trials were varied and that no strong evidence existed that usual forms of homeopathy for asthma are effective.

This is not a surprise given that homeopathy is just a ritualised placebo. Hopefully, most parents attending this clinic will have the good sense to go to a real accident and emergency unit in the event of a severe attack and consult their GP about real management of the illness. I would hope that Julia does little harm here.

However, a little more research on her site reveals much more serious concerns. She says on her site that ’she worked in Kenya teaching homeopathy at a college in Nairobi and supporting graduates to set up their own clinics’. Now, we have seen what homeopaths do in Kenya before. It is not treating a little stress and the odd headache. Free from strong UK legislation, these missionary homeopaths make the boldest claims about the deadliest diseases.

A bit of web research shows where Julia was working (picture above). The Abha Light Foundation is a registered NGO in Kenya. It takes mobile homeopathy clinics through the slums of Nairobi and surrounding villages. Its stated aim is to,

introduce Homeopathy and natural medicines as a method of managing HIV/AIDS, TB and malaria in Kenya.

I must admit, I had to pause for breath after reading that. The clinic sells its own homeopathic remedies for ‘treating’ various lethal diseases. Its MalariaX potion,

is a homeopathic preparation for prevention of malaria and treatment of malaria. Suitable for children. For prevention. Only 1 pill each week before entering, during and after leaving malaria risk areas. For treatment. Take 1 pill every 1-3 hours during a malaria attack.

This is nothing short of being totally outrageous. It is a murderous delusion. David Colquhoun has been writing about this wicked scam recently and it is well worth following his blog on the issue.

Let’s remind ourselves what one of the most senior and respected homeopaths in the UK, Dr Peter Fisher of the London Homeopathic Hospital, has to say on this matter.

there is absolutely no reason to think that homeopathy works to prevent malaria and you won’t find that in any textbook or journal of homeopathy so people will get malaria, people may even die of malaria if they follow this advice.

Malaria is a huge killer in Kenya. It is the biggest killer of children under five. The problem is so huge that the reintroduction of DDT is considered as a proven way of reducing deaths. Magic sugar pills and water drops will do nothing. Many of the poorest in Kenya cannot afford real anti-malaria medicine, but offering them insane nonsense as a substitute will not help anyone.

Ironically, the WHO has issued a press release today on cheap ways of reducing child and adult mortality due to malaria. Their trials, conducted in Kenya, of using cheap mosquito nets soaked in insecticide have reduced child deaths by 44% over two years. It says that issuing these nets be the ‘immediate priority’ to governments with a malaria problem. No mention of homeopathy. These results were arrived at by careful trials and observation. Science. We now know that nets work. A lifesaving net costs $5. A bottle of useless homeopathic crap costs $4.50. Both are large amounts for a poor Kenyan, but is their life really worth the 50c saving?

I am sure we are going to hear the usual homeopath bleat that this is just a campaign by Big Pharma to discredit unpatentable homeopathic remedies. Are we to add to the conspiracy Big Net manufacturers too?

It amazes me that to add to all the list of ills and injustices that our rich nations impose on the poor of the world, we have to add the widespread export of our bourgeois and lethal healing fantasies. To make a strong point: if we can introduce laws that allow the arrest of sex tourists on their return to the UK, can we not charge people who travel to Africa to indulge their dangerous healing delusions?

At the very least, we could expect the Society of Homeopaths to try to stamp out this wicked practice? Could we?

We all headed off to one of our favourite places yesterday, W5, named for the 1st 5 'W' words in the post title. As Thomas announced, 'all the things here were invented by scientists.' We met with a few other HE families and had a fantastic day out. There's so much to investigate and the children all love it.

They have an area where you can record a weather report in front of a blue screen. You choose your background; either a TV studio or on-location footage of a hurricane or a volcano. There's a TV camera at the front and an auto-cue of the script. Lady enjoyed hamming it up, reading the script and pretending to be blown all over the place during a hurricane. Duncan joined her, watching himself on the monitor and jumping around the place for the camera. They then watched the recording on the big screen.

Duncan enjoyed a few repeat performances then went on to something else. But later in the afternoon, while the other children were watching one of the demonstrations, Duncan took me back the the camera, and spent 45 minutes filming himself and watching the footage. He pulled a stool over to stand on, then he'd wait until after the count down to announce recording, then he'd say, 'Look at this!' then '3, 2, 1, WOW!' as he jumped off the stool into the air. He also did a fair bit of dancing, chattered about stuff I couldn't make out, apart from 'Tots TV' and sang a bit of the 'Duncan song'. At one stage, he stood on the stool and pulled his trousers down a wee bit at the front, getting ready to wave his little bits about (to avoid using language that attracts creepy Google hits). This area of his anatomy has always held great fascination, but he's lately begun to talk about it so much more! Needless to say, I didn't want that on camera! I told him, in a matter of fact way, to keep his trousers up. Though the child is so skinny, that even with a belt on, his trousers are often lying a bit low!

Duncan and I also spent ages on the huge model of a cargo ship and crane. The crane was fitted with an electro-magnet and could be moved in 3 dimensions, to lift metal 'crates' onto the ship. He quickly figured out how to control it.

Another favourite were the story cubes. These have a selection of pictures of a cartoon man or woman doing things like laughing, looking grumpy, talking on the phone, opening a door or blowing kisses. There are a few cubes showing various objects too. Duncan arranged the cubes, choosing which face to display and in which order, in a slot. Then he pressed the start button and the cubes were 'read' to produce a little animation on the screen. He made loads of little films. He particularly liked making the characters talk on the phone and then slip on a banana skin, before looking grumpy, then he'd have the man give the woman a present. That too took a lot of concentration.

While I was minding Duncan, Thomas and Lady hung out with my friend D. and her boys. They watched the displays and Lady helped out with 2 demonstrations. She told me she 'was Jupiter', and later, she had to wear safety goggles ('like Gabriella in High School Musical') for an experiment involving vinegar and sodium bicarbonate.

The day ended with everyone in the Start area, which is aimed at younger children. Duncan played with the wooden trains, and I had a (plastic) meal prepared for me by my friend's 2 year old.

We have been going to W5 for a few years now. I remember the first time we went. I took the 3 children and met up with the other home-educating families, whom I didn't know so well then obviously. I don't know exactly what happened, except that I was very stressed and harried, Duncan was running all over and having a very hard time, and I dragged all the children back to the car after after a short time, where I sat in tears of frustration for a while. How different yesterday was! I still need to stay right by Duncan, and I'm lucky that Lady and Thomas are so well behaved that they will stay with D. and not cause her much extra effort. But I have never seen Duncan slow down and concentrate for such long periods on all the exhibits. It was wonderful, even if I was knackered by the time we got home.

9 Oct 2007

On Saturday morning, I was lying in bed half listening to the Today programme on BBC Radio when someone called Catherine Pepinster came on to give her Thought for the day. This is a short daily slot in the middle of a popular news and current affairs show, which is described by the BBC as, 'reflections from a faith perspective on issues and people in the news.' I have listened to it hundreds of times, usually unwittingly. It is often bland, preachy, irrelevant and occasionally, yep, thought provoking.

On Saturday the subject was; Can reciprocal altruism really explain the most extraordinary sacrifices that some people make?

Yet can reciprocal altruism really explain the most extraordinary sacrifices that some people make? Can genes really explain the price paid by Fr Maximilian Kolbe who volunteered to die in the place of a stranger at Auschwitz.I suspect he was more driven by Christ's admonition that we love our enemies, do good, and expect nothing in return. From time to time one comes across an example of altruism, of sheer goodness that no biologist could ever explain.

Let me give you an example. A friend of mine took a year out of his own life to accompany a man suffering from a terrible degenerative disease on a tour of America. For 12 long months Joe drove Billy across the United States in a car specially adapted for his wheelchair, caring for him, helping to wash and feed him. He had no reason to do it other than a sense of fellowship. Joe won't be embarrassed by me mentioning this; he died suddenly this week, 10 months after Bruce's own death. Joe's story illuminates that being truly human takes far more than being a biological construct. Words don't always stretch far enough to explain it. A Christian might say it reveals the inspiration of the Holy Spirit. But all of us would agree that it is love.

I woke up slightly more as I heard these words, and my response was a bit sweary. This woman, had just compared a man sacrificing his life for a stranger in a Nazi death camp, to her friend's decision to travel around the US for a year while working as staff to a disabled person?! Am I missing something?

Look at the language used, her friend 'took a year out of his own life to accompany a man suffering from a terrible degenerative disease'.

How did he take this year from his own life? Was he in a coma? No, he was working, possibly for low pay, or perhaps even just for expenses, and getting the chance to travel around America, presumably seeing the sights and staying in nice places. All this, for '12 long months'. Were they travelling extremely fast in that 'car specially adapted for his wheelchair', and perhaps experiencing some time dilation?

'He had no reason to do it other than a sense of fellowship.'Was he forced to take the job? Did he not enjoy it? Was there really no other reason than a 'sense of fellowship'? Perhaps Joe too wanted to travel around the US and this provided a good opportunity. Perhaps Joe and Billy got on really well and had an absolute blast on their road trip, no matter that one of them required services from the other. I hope so.

It's terribly sad that both these young men died so soon after each other, one's death being presumably sudden and unexpected. But it's sad that the people left behind are interpreting that time as a terrible waste of a year in his life. What should he have been doing instead?

Loads of us are caring for a disabled person. That's not a 'most extraordinary sacrifice', it's just life. And especially when a person's job is to care for another, that's just work. It's good and worthwhile work, not well enough paid, and from what I hear, there are some excellent staff out there supporting and enabling their clients.

6 Oct 2007

A load of ever so clever folk have joined a new blog aggregate, Bad Science Blogs. I was having a little look through and came across a post on The Quackometer which made me laugh. Isn't this just brilliant!

I bought a cuckoo clock yesterday. Duncan has had a thing about them for a while, ever since he saw my aunt's clock during a visit to her house. I have drawn loads of clocks, and he has Googled and YouTubed. His current favourite YouTube film is about a quilt-shop cuckoo clock. It's so funny watching him watching this film. It's not what most 7 year old boys would enjoy! When we headed out in the car last week, he directed me to take him to the Black Forest! Sadly, it's not quite in the neighbourhood.

He drew a lovely cuckoo clock picture on cardboard and I helped him to cut it out and make a 3D model clock, with doors and a bird inside. In his Wednesday art class, they were making things from Fimo and Duncan opted to make a little bird for his cardboard cuckoo clock. Thomas made a green snail and a badge for Gordon.

Anyway, I saw that they had cheap-ish clocks for sale at Argos, so yesterday I thought I'd get one. The children all came to the shop with me. Duncan was oh so excited. He was bouncing up and down and laughing and saying, 'Duncan get a cuckoo clock!'

We took our new precious time-piece back to the car where I had to open the box immediately so we could all get a look. Duncan was just bursting with happiness. He cradled the clock on his lap as I drove to the next part of our day's activities, the swimming pool.

Now Lady and Thomas have been wanting to go swimming for ages and I kept letting them down. So we finally decided to go during the day instead of in the evening. It should be obvious right, we're home-educating and all! But I'd been a bit concerned about looking after the 2 boys alone in the pool. The last few times we'd been, Thomas was really nervous and either clung to me or stayed really close, and was shivering soon after getting in, perhaps because he wasn't moving about enough to keep warm. Also, whenever I'd said to Duncan about going he became distressed and cried, 'no go to swimming pool!' Eventually I realised what was troubling him, and I said, 'Duncan go to the swimming pool, not go in the shower, just in the pool.' Then he agreed to go.

So we left the clock, with the bird carefully set out of the doors, and went to the leisure centre. It was fabulous. There were few other people there. I'd called up in advance and discovered that if we arrived between 12 and 1.15, there wouldn't be any school groups there. So we got ready in a family changing room and entered the water. I was astonished at Thomas. He put on his goggles, and he was off! He was jumping in and diving under and swimming a metre or 2 and had no fear at all! I don't know what had happened! Duncan loved it too. he mostly stayed in the shallow area by the steps and just splashed about and jumped and laughed. Lady did her usual crazy mermaid thing; she just loves the water. We will definitely make this a weekly thing.

Afterwards we had chip-shop chips, the best kind, and went to visit some friends whom we hadn't seen for a while. While we were there, Thomas and Lady had loads of fun playing a a game called 'doggy tag' which involved running from a swing to a trampoline while trying to avoid the 'lick power' (Lady's term) of their 2 dogs. I had a lovely game with a bundle-of-gorgeousness 2 year old, in which he kept booing me. Also provided was the tea and chat I had required when I posted yesterday.

Today Thomas and Lady went to Jujitsu. Thomas was so pleased to get his gee and looks ever so handsome. I'll have to post a picture as soon as I get round to buying a new charger for our digital camera :-(

Lady said Thomas was really going for it at their class today, and a big boy who has a brown belt was supporting him at the wrestling bit they do at the end. Thomas told me that his Sensei's mum turned up and expresed surprise that he had a mum. The he thought for a bit and said, 'actually, everyone on the whole planet has a mummy.' After a bit more thought he declared, 'except Luke in the Sarah Jane Adventures.' He's right, Luke was created from an amalgamation of the DNA from scans of the human guests to the Bane-run 'Bubbleshock' factory. So there.

5 Oct 2007

The home-educating family who live round the corner visited yesterday for a few hours. The little 4 year old girl was frightened by Duncan. He got grumpy a few times for various reasons; he was frustrated that he couldn't tie a rope round his big toy car, or he was upset when Thomas got cross with him over a different toy. In his grump, he pushed at me, and hit out at me in front of the visiting children. He also was shouting. Then he pushed the other mum a bit. She wasn't hurt or annoyed. I told him not to push, it hurts. But the little girl was upset and said she didn't like this place. Duncan's outburst was over fast, as it always is. I tried to explain to the girl, but it's hard to know what to say to a child you don't know well. I told her that Duncan can't talk as well as other children, that some things are difficult for him, he's trying hard to learn how to behave properly and I have to keep helping him. I told her that he's not a bad boy even though he does the wrong things sometimes. I don't want her to be frightened. And I know Duncan is trying his best all the time and just hasn't developed the skills to deal with his frustrations in a more appropriate manner. In fact when they arrived, Duncan was happy and went to hug them all and rubbed them all on the head in a show of affection. Her mum was right beside her and no doubt would have taken her home if that's what she really wanted. I think I'll have to talk with the mum about this.

But it just feels like we're all too wound up in this family these past few days. Lady and Thomas have spent loads of time playing together as they always do, but they've been fighting too, getting angry and loud. Duncan just seems to the barometer or the house. If anyone is upset or cross, it affects him and makes him far more likely to have an outburst. He's been more physically rough over the past few days, and it's all because of the atmosphere. If one of the others gets cross with him, he's likely to come straight to me and angrily squeeze my arm or punch at me. It's like he stores the worst of his anger to let off with/at me. Perhaps he feels more secure with me than the others. It's hard to know.

What I do know, is we all have to try to reduce the grumps we're all having, lower the volume a bit, chill out and enjoy each other.

It may sound from this that the past few days have been all bad. Really, we have had loads of fun, it's just that the fuses seem shorter. We're going to visit some other friends now. We've know them for a while and they are well used to all of us and our little ways. I reckon tea and chat is what I need right now.

1 Oct 2007

Thomas and Lady headed off to their jujitsu class on Saturday with my dad. Duncan and I picked them up when it ended. Duncan was attired in his over-sized 'Duplo train' T-shirt, Gordon's sunglasses, a top hat and carrying an umbrella. He looked very dapper. He'd not wanted to wear any trousers under the T-shirt, but I'd managed to persuade him that he'd feel too cold without them.

On arrival at the leisure centre, I saw a sign advertising an American model railway exhibition. Well, we had to check that out. We piled into the hall, and it was like a dream come true to a train fan like Duncan. There were maybe 10 different model railways, all very elaborate and detailed. Loads of engines, track and carriages were on sale also. These were mostly the Hornby type; proper model stock, and costly too. Duncan managed to find a small Ziploc bag of Thomas the Tank stuff, little mini trains each only a couple of cm long. I bought them, but not the Percy engine he found later, which cost £30! He had a bit of a tantrum at that, but it didn't last and we got back to watching the trains soon enough.

We all enjoyed the trains and Duncan was very good about keeping his hands off, more so than the last time we'd seen a model railway display. I did keep reminding him to just look, use his eyes, keep hands off. About 3 times, a little hand darted out to gently touch an engine or a minuscule sheep, but he knew he wasn't supposed to really. Lady and Thomas enjoyed the displays too. They stuck together while I stayed close to Duncan.

Duncan got lots of compliments on his hat. He did stand out! It seemed to be older men who were running the railways, and there were little groups proudly presenting their latest acquisitions. Then there was this oddly dressed little boy, his face shining with delight, following a particular engine round the track, his face level with the engine, his eyes squinting a bit (to see more detail, I think) and squirming past them to stay with his favoured engine. I apologised a few times when he bumped someone a bit, but they weren't bothered. They said it was nice to see children enjoying it all. One fellow was so kind. He let Duncan come in behind and sit on his high stool and press a few buttons, flip the switches and turn the dials. Oh how Duncan loved that!

We went to an adjoining room for a drink and snack, and Duncan brought out his bag of engines and started playing with them on the floor. A boy came up and started talking to him about them. Duncan ignored him so the boy spoke to me instead. He told me how he loves Thomas trains even though he is 10. He also told me about all his other trains in great detail, and about his sister and many other things beside, and asked me lots of questions. He was such a sweetheart. As we went out, I said goodbye and told him I'd enjoyed our conversation. His mum and I smiled at each other. We knew our boys had something in common.

About this Blog

Curious, enthusiastic and affectionate mother of 3, one of whom is perfectly autistic. I parent, read, play, blog, whinge, educate, clean and occasionally argue on the internet. Pro-science and anti-quackery, I find great joy in each of my children and strive to help them learn and grow in an atmosphere of love and acceptance of their differences, difficulties and strengths.

The children's pseudonyms reflect my autistic son's one time love of all things Thomas the Tank Engine.